Tag Archives: support

Families of brain injury survivors are often the unsung heroes of the injury experience. They are the individuals who insisted the doctors not give up on their loved ones. They are the individuals who spent the sleepless nights on uncomfortable hospital chairs and stressful days trying to hold a chaotic home life together. They battled the insurance companies for hospital and rehabilitation coverage. They support the survivor in countless ways during rehabilitation and then beyond the point when formal rehabilitation services conclude. However, many family members and friends fail to adequately appreciate the burden that a caregiver is under. Even some of the primary caregivers themselves may not fully recognize the difficulties they are experiencing. The stress and problems due to caregiver burden can lead to those caregivers experiencing a decline in both physical and mental health.

When a person is injured, families often get a sudden call from the hospital warning them that they must come as quickly as possible because their loved one is hurt and may die. It is important to appreciate this terrifying experience. Life is instantaneously turned upside-down. Family members run off to the hospital not knowing what to expect. Often they come to an emergency room to find their loved one hooked up by a number of tubes and hoses to a variety of machines. In the case of an accident, the loved one may well be horribly bruised and bleeding with broken limbs. Doctors likely will come over to advise the family of the terrible news and to inform them of the potential severity of the injury, often relaying death as a possible consequence. Family members are thrust into the position of caregivers required to make life-and-death decisions. They may be asked to consent in their loved one’s place for complex surgeries such as a craniotomy (in which part of the survivor’s skull is removed to counter swelling and bleeding in the brain). Even with these life-saving procedures, families are warned that their loved one may not survive. This may then leave families forced to wait on pins and needles for days on end. Their loved one may be in a coma for days, weeks or even longer. During such a period, family members may rightfully worry whether their loved one will ever wake up at all. The newly injured person may suffer setbacks such as seizures or infections such as MRSA, each of which bringing with it new risks and fears. At every step family members are forced into the role of caregivers, being updated by doctors and attempting to make the best of often unpleasant situations. In some cases, family members are the first to find their injured loved one following the brain injury or actually even had the misfortune of watching the injury as it happened. In these cases there is the added terror of having to summon an ambulance while helplessly watching as a loved one suffers. This can be not only an incredibly scary moment but also an incredibly lonely moment as the family member stands alone, staring at the clock and hoping the ambulance will arrive in time.

These injury events are often the start of the caregiver burden experience. The caregivers undergo a physically and mentally exhausting experience and though their loved one may survive, the injury event experience often leaves a permanent emotional scar. This is a traumatic event, similar in some ways to the trauma someone may experience watching a fellow soldier get shot in battle. There are feelings of fear and helplessness as little is left to do but watch as a loved one fights to survive. Caregivers may have nightmares regarding their loved one’s injury. They often go throughout the day worrying that their loved one will suffer subsequent injury and decline or even worse, die. In some cases, caregivers blame themselves for their loved one’s injuries. They may tell themselves, “If only I hadn’t let her have that last drink, she would have never been in that accident” or “If only I’d made more of an effort to ensure that he’d eaten better, he would have never had this stroke”. For some caregivers the date of the injury becomes an anniversary of a new life. For others it will forever be known as the anniversary of a death of life as they knew it, no matter how much their loved one improves.

With this in mind, it is vital for caregivers to acknowledge the enormity of the injury event and to allow themselves to work on the resultant emotional experience. Caregivers need to give themselves permission to reach out for help and support. It is important for those in the caregivers’ lives to help support these caregivers and provide a safe space for them to share their experiences (of course only up to the level with which the caregivers are comfortable). Often, rehabilitation therapists are the first to notice the caregiver burden and to offer to help caregivers with these abundant concerns. In many cases, caregivers benefit from counseling and/or psychotherapy in efforts to work through their emotional experiences. A well-defined medication regimen appropriately tailored to an individual’s needs can also aid substantially in attaining emotional balance. Some family members may benefit from meeting with clergy so as to aid in their spiritual recovery from this experience. Also, brain injury and/or stroke support groups can be very useful in managing the emotional impact of this experience.

I hope this post shed some light on the caregiver burden as it specifically relates to the initial injury event. Feel free to comment below with any questions.

Going through life with a brain injury can be a remarkably difficult experience for a brain injury survivor. Life has changed, often in many dramatic ways. Sometimes utilizing the most basic of skills, such as using the restroom or remembering to turn off an oven, can present the most complex of challenges. Life is often just as hard (and in some aspects can be even harder) for the survivor’s family. Everything has changed for them, too. Family members often find that new roles are now required of them and that new stressors now confront them at every turn. A wife may now find herself serving as her husband’s primary caregiver. A brother may now necessarily be conscripted as his sibling’s chauffeur to constant doctor’s appointments. On top of all this, there is so much to learn in a field with which both survivors and family members almost always have little to no previous familiarity. This can make for an incredibly lonely experience. Survivors and family members may ask themselves, “Is there anyone else in the world who knows what this feels like?” While the brain injury survivor is a patient in an inpatient rehabilitation program (a very common experience in post-injury life), the survivor can often rely upon the camaraderie of fellow patients. Family members may become friendly with the family members of other survivors and chat on a regular basis. Both survivors and their families will have regular contact with staff who are able to provide support and knowledge. However once the survivor discharges from that inpatient facility, he or she suddenly has little to no contact with other brain injury survivors. Families lose contact with each other and no longer have available as an option just popping in to a therapist’s office for a quick question. This is when the brain injury experience can be its most lonely.

Support groups can help fill this gap. Support groups are groups of individuals with similar experiences that meet on a regular basis to discuss those experiences. Individuals may offer suggestions and advice or just provide a shoulder to lean on. Support groups exist for a wide selection of health-related issues ranging from living with cancer and diabetes to coping with grief, struggling with substance abuse, and of course, rebuilding one’s life in the aftermath of a brain injury.

There are two primary types of support groups that are most relevant to brain injury survivors, namely stroke support groups and brain injury support groups. Stroke groups tend to be more common than brain injury support groups, though in most larger population areas one will be able to find a brain injury support group in addition to stroke support groups. Among stroke support groups, there is a small subset that are specific to aneurysms (though survivors of aneurysms and their families are of course welcomed in a general stroke support group). Support groups are often run out of hospitals, rehabilitation facilities, community centers and houses of worship. If a group’s meetings take place in a hospital, usually the survivor does not have to be a patient (past or present) of that particular hospital in order to attend. In addition to the aforementioned support groups, there are support groups designed to address certain specific symptoms of brain injuries. For example, there are aphasia support groups, apraxia support groups and memory support groups.

Each support group tends to have its own individual program and essential dynamic. Some provide more educational content while others tend to offer more of an emotional/social support program. Some are survivor oriented, others family oriented and still others are oriented to both survivors and their families. If you do not feel suitably comfortable at one group, you can always attend another group. Also, there are available some online support groups necessarily better suited to those who have difficulty leaving their homes. Some survivors and families will even create their own groups when confronted by a lack of groups tailored to their specific needs in their vicinity.

Below are a few links that may aid in finding a support group:

For brain injury support groups, click on your state affiliate of the Brain Injury Association of America and scroll to the Support Groups section: